Any possible way this is not ALS?

[Barbie]

I feel so sorry for you--it must be really terrible to be so convinced you have a horrible illness like ALS and not be able to accept that you do not. It is really sad to read your posts and especially what you just wrote.

ALS clinics do not throw out real patients--they were trying for some tough love to make you realize you do not have ALS. You do have a real illness which is health anxiety and it is extremely serious--yet you do not take it seriously.

stop calling neuros and call a psychiatrist and get some treatment for that. You will not be able to live if you do not--they are right you will end up in some institution or on the street, shunned by everyone. You have the ability to grab life and enjoy so you must do it. I am sure that some therapy will help you--frankly it helps everyone and never hurts! The first thing you need to do is get off this forum and do not come back because you do not have ALS (and you are lucky). then you should get off your computer completely, do not search symptoms do not look at anything medical or health related. then you should pick up the phone and call a psychiatrist and make an appoint ment for next week.

good luck to you-

 

[bluedog]

... got cut off when typing previous post.

Wanted to say the following about my breathing:
-Frequent yawning during the day.
-Waking every hour at night due, presumably, to not getting enough oxygen.
-Speaking in shorther sentences.
-Shallow fast breathing.
-Headaches during the day.

That, together with the weakness in arms and legs, fasics, swalllowing/choking issues, dropping things more frequently, weight loss, loss of muscle bulk, etc, makes it difficult to write this off to anxiety and GERD and not a larger constellation of symptoms adding up to ALS.

Also had change from consistently higher blood pressure over the years (140s - 150s ... first number) to all of a sudden consistently lower blood pressure (118s to 120s). Read that that is an ALS thing too. Today, I saw stars for a few minutes after rising after picking up my keys in the parking lot, which I dropped. This also appears to be an ALS thing, ... the low blood pressure plus signal not getting to arteries, causing eye neurons to fire at random.

Seems like I had UMN for years, and now the Bulbar/breathing part is kicking in together with weakness. And every other symptom that I have seems like ALS, even the constipation, which even the MDA site says can be due to poor motility. Even the anxiety can be due to not getting enough oxygen.

I guess the next stop is a pulmonologist to get some concrete breathing stats there to bring to a different neurologist.

 

[Barbie]

I just wrote you a post--it went to moderation--basicly--NONONONONONNOOO.

do not go to another Neuro or a pulmo--go to a psychiatrist. it is not "adding up to als". I feel very sorry fo you, and this post is even crazier than any other. You are so convinced it is als you can not accept that you have a very serious illness called health anxiety and it is going to kill you if you do not go to the correct doctor.

you need to get off the computer and get on the phone, make an appointment and go next week! Please help your self correctly.

 

[notme]

What Barb said...and...

It's very doubful that you have ALS--but it does sound like you might have sleep apnea which is treatable with a c-pap. See about a sleep study. Your GP can order it--and it will TELL if your issues are from normal sleep apnea--or central--which could signal something more serious wrong.

If you insist--spend the money on a pulmonary doc for a FVC--but I'd bet if there are issues--it's the lungs themselves, not the muscles that help them work.

You're putting a bunch of stuff together and trying to make it add up to ALS.

Als may perhaps in the LATE stages cause bowel issues--but not in the early stages at all. And it doesn't affect blood pressure. Your pressures noted in your post are NORMAL not low. When it's below 90 systolic (the top number) you can start to worry.

You're going to drive yourself (and everyone you know) crazy if you don't get a handle on this.

If you do have sleep apnea-- it can be causing ALL your problems

I'm sorry, but this will be my last post to you. You're not listening --not to me or to the doctors. There comes a point when I just have to say 'enough' and stop expending energy and typing long posts like this that is PAINFUL for me.

I'm done. Get some help with the anxiety and see about the breathing. Good luck to you.

 

[bluedog]

Update:

I'm taking Klonopin, which is helping a bit with the anxiety.

Met with the ALS specialist at the Mayo Clinic on Tuesday. Normal exam. He said I don't have ALS, but scheduled an NCS/EMG, pulmonary testing, speech evaluation, and swallow study at my request.

The EMG was of the left leg, left arm, face, and also included a half hour long single-fiber EMG of the forehead (not for MG but to detect ALS). The NCS/ EMG was completely normal. The pulmonary test values were all over 100%, except for the MIP, which was low at 83%. The MEP was 102%.

I didn't speak with the neuro yet, but spoke with the assistant who feels that the type of EMG performed would have picked up Bulbar or other onset. She said that with the clean EMG and exam, the low MIP isn't worrisome for ALS. To me, the MIP confirms my worries about Bulbar ALS and weak breathing muscles, and that the EMG pick up Bulbar onset.

Questions:

In the context of my history in this thread, does the MIP indicate ALS?
Do you think I have Bulbar ALS?

Thank you for any input that you can provide.

 

[bluedog]

sorry... meant to say that I'm worried that the EMG _didn't_ pick up Bulbar onset ALS and that I still have it.

 

[vickim]

The drs have said no you do not have als, people here have told their opinion and still you believe you have als. Why are you asking again when you won't believe what you have been told by so many? You are truly making yourself very sick with anxiety, you need to seek help for that. I am sorry. I wish you peace and strength to hear what everyone has told you.

 

[bluedog]

I am listening to the input on this board and from my drs. I started anti-anxiety medication. And I respect the opinion of my latest neurologist. But he didn't have the pulmonary results when he said that I don't have ALS.

So that's why I am asking the opinions of the people on this forum. A low MIP is another one of those things that points to ALS and there aren't a lot of other things that could cause a low MIP that haven't already been ruled out.

So the question is, "Is a low MIP (101, which is 83% of expected) a problem when there is a normal exam and EMG?" What if the onset is Bulbar, in which case the EMG might be normal? Is the low MIP a problem then (point to ALS)?

 

[Nighthawk]

Why are you so obsessed thinking you have a disease you don't have.
If I was you being told by the Doctors you don't have ALS, I would definitely be partying on the streets 24/7.

 

[ottawa girl]

Blue dog,

I've read every word on your thread. So there is no misunderstanding, this forum and its members want to, and do, help people. But when those people clearly do not hear us, nor their own doctors, there comes a time when enough is enough.

Do you have any idea how difficult it is for many PALS to post answers to your repeated and now redundant questions? Notme for example struggles with each and every keystroke. Do you have any idea how hurtful it is to a CALS to see your persistence at wanting this disease? Barbie for instance cares for her husband and family, works full time and spins all the plates! AND she took time to reply to you. In fact, she said it best. " Stop calling neurologists. Call a psychiatrist" (and get healthy)

At least you have that option! I believe if you make as much of an effort in treat- ing your anxiety as you have in seeking an ALS diagnosis, you will succeed and resume a happy life.

Best of luck to you.

 

[bluedog]

I truly appreciate all the replies and did not mean to offend anyone. I will stay off the board and concentrate on treating my anxiety. Thank you again.

 

[notme]

Bluedog,

Against my better judgement--your pulmonary function is basically NORMAL to above normal. That 83% MIP isn't that low.
80% to 100% of predicted is NORMAL.

Want mine? I'll send the O2 tank and the bipap while I'm at it... Your lower than you'd like MIP could have to do with your EFFORT on the test, even. No, no, no, it doesn't mean you have bulbar ALS!

And honestly, you're complaining about having perfectly NORMAL BP? Really? 118-120 is NORMAL--it's not "LOW" at all. It's 'healthy'. My daughter, who has NO ALS..has a BP in the low 90's on a GOOD day. Want to talk about standing and seeing stars? She does it daily.

You're taking a hodge-podge of symptoms and NON symptoms and trying to fit them in a box they don't fit in.

You say you're listening--but you're not. Not to us (Which is fine--though I don't know why you'd consider seeking advice from us) or from doctors---who have SEEN YOU.

Did the Pulmonary doc said you had something to worry about? I'll answer for you--the answer is no--because that's a NORMAL test.

 

[bluedog]

It has been almost a month, so I want to post an update and see what you guys think. I am sorry for offending people in the past by coming off as being so hysterical.

I met with the Mayo neuro on April 9th, and he said that he was 100% sure that I don't have ALS based on the exams and testing.

Not counting the symptoms from 12 years ago, this all started with trouble swallowing solid foods about 7 months to a year ago.

My current symptoms are:

-Still having problems swallowing solids, and no apparent problems with thin liquids. It takes multiple swallows to get many types of food down and often requires me to wash it down with water. I know most people start with problems with liquids, but I've read of many on this forum who started with problems with solids.
-Feels like I have weakness in all limbs. Feels more like spasticity, except for left arm, which feels weak.
-Clumsy hands and drop things.
-Random cramping, mostly feet and hands.
-Voice has been hoarse for many weeks steady now, with no let up. Volume lower especially after exertion.
-Need to cough after eating and have phlegm after eating and at night sometimes.
-Twitching in most body parts.
-Apparent atrophy of right massater muscle in face (EMG done on left massater).
-1 inch diameter dent beneath knee, which appeared over night, the night before my consultation with the Mayo neuro. The neuro acknowleded it but said it was in the fascia, not the muscle of the aneterior tibalis. I went to an ortho, and he said it was in the fascia too, but had no explanation for it. (Does fascia atrophy not occur in ALS... is that why the neuro wasn't worried about it? Seems strange.)

I'm still very worried even though the neuro is so strongly saying no ALS.

I would think that the EMG of my left arm would have shown something because I have felt weak in that arm for a while. I'm concerned that other than the atrophy and twitching, this is all UMN, which is why the EMGs didn't pick up anything. To date have had EMG of right leg and arm and then another EMG of left leg, arm, shoulder, face, and single-fiber EMG of the cranial nerve in left part of forehead, which the report says if for examining the cranial innervated muscles. (Does the single fiber detect just the crranial innverated muscles on just left side because it was done there or whole face?)

Could I still have ALS? What should I do next? I really need some type of diagnosis before I lose my job and benefits?

Obviously, if I didn't feel so poorly I would take the word of the neuro and not look back. But others have had clean EMGs and gone on to get an ALS diagnosis. And going through the archives, it seems that everyone whose first symptoms were swallowing difficulties (solids or liquids) ended up with ALS, except for two cases, in which one had cancer and the other Lyme (not saying I read every post, but that seems to be the trend). Also, over the years, I've read probably hundreds of histories of PALS in this and other forums, and it seems that most have a history of weightlifting and running or other vigorous exercise. I have that history too.

Thank you for any input or suggestions.

 

[vickim]

You went to one of the best hospitals in the country and was told you don't have als. You have had test after test and told no als . I am not saying you may not have something wrong but it is not als. Maybe you need to seek some counseling and some anxiety meds.

You should be doing something to celebrate. I don't think anyone here can quell your fears or help. I don't think you will listen, unless it is someone telling you that you have als. I am sorry for you. I wish you peace.

 

[bluedog]

Thanks vickim. I just don't understand how I can have such strong ALS symptoms and history and not have ALS when no other explanation other than anxiety has been offered by the neurologists. It would quell my fears if someone actually had these symptoms and it turned out to be just anxiety or anything relatively benign. But I don't see how that could be the case and haven't read of that happening.